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Looking for comfort during a less-than-comfortable diagnosis

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from patient advocate Stan Hardin.

Society teaches us that men are the “tough” ones. Men don’t want to be considered weak, or unhealthy – which is one reason they don’t see their physicians as often as they should.

Ten years ago this past July, when I was 44, I had to overcome my own inhibitions of visiting the doctor I had seen for regular checkups over the years. Those visits were always standard - that is, except for the dreaded “turn your head and cough” moment, when things became uncomfortable for me. So this appointment, during which I was there for the doctor to examine my penis, was a difficult one.

I wound up being diagnosed with Peyronie’s disease, a condition characterized by the formation of fibrous tissue plaques within the tunica albuginea, usually causing a penile deformity and subsequent erectile dysfunction.

My general physician referred me to an experienced urologist who was trained in treating PD. His expertise went further than just treating me physically. He actually took time to sit and talk with me, and his attention on how PD would affect me psychologically and emotionally made all the difference to my being able to cope.

In 2002, with the Internet still in its infancy, there was nothing available online about PD to help me. So I created my own site and, eventually, a nonprofit advocacy organization. With exposure on the Internet came connections with other men suffering from PD, and through this communication I have made several interesting observations.

What stood out most prominently was the men feeling that male physicians themselves were uncomfortable talking to men with PD. Since this is already an awkward situation, any physician who appears this way will make his patients that much more uncomfortable. I believe that the “turn your head and cough” moment resides within the experience of men with PD much more profoundly.

There is also a general feeling of helplessness about this disorder, as evident by two patient comments on our site:

I’m 31, married and too young for PD, I’ve had it for 2 ½ years. The urologist told me to take Vitamin E and that there is no treatment; he scheduled me for a follow up appointment. I never went, what’s the point?

And:

I have had PD for two years... My doctor sent me to a specialist, who told me that if I had been looking at PD on the internet, that I knew more about the disease than he did… I am 57 years old and very surprised at the dismal options for real help out there!

It’s clear to me that any physician who examines a man with PD - and with any “below the waist” disorder – needs to be aware of, and sensitive to, the patient’s uneasiness about being examined and being diagnosed with this type of disease. The importance of communication cannot be overstated.

I now know how fortunate I was to have a urologist who understood the complexity that surrounds a diagnosis of PD, and who came to my level and made me feel comfortable with the disease and talking about it. Even after a diagnosis of PD, I can proudly proclaim that I am still a man – and also an active participant in my health care.

Stan Hardin, of Colorado Springs, Colorado is founder and president of Association of Peyronie’s Disease Advocates, a nonprofit organization dedicated to the education and awareness about PD, The clinical information from the APDA is overseen by some of the most renowned urologists who research Peyronie’s disease and treat men with PD.

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